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RECOVER: Researching COVID to Enhance Recovery Home
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Sharing data for broader impact

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Available Results and Data Public Access Controlled Access Resources

Accessing RECOVER Data

RECOVER study data represent the contributions of thousands of study participants since observational studies began in 2021. RECOVER researchers have published findings based on these data in dozens of peer-reviewed journals. Beginning in 2024, RECOVER made significant progress towards its goal of sharing these data with the scientific community and the public at large.

In compliance with NIH’s Data Management and Sharing Policy, RECOVER allows those interested to view the data and researchers to analyze it, learn from it, and incorporate it into future studies. In this way, we hope to broaden and extend our understanding of how to diagnose, treat, and prevent Long COVID.

Available Results and Data

RECOVER is committed to sharing results and data from its observational cohort studies with researchers outside the RECOVER consortium and the public. This is accomplished in three ways:

  • Publications: RECOVER maintains an annotated, searchable list of peer-reviewed research publications. Where available, links to request publication-specific data are provided under the “Resources” associated with individual publications. Browse RECOVER publications.
  • Public access (no registration required): Access to grouped, anonymized data is available through a data exploration and study group- (or cohort-) building tool called Open PIC-SURE. PIC-SURE stands for Patient-centered Information Commons: Standardized Unification of Research Elements. This tool allows anyone to access and search available data, find health data they are interested in studying, and build cohorts based on symptoms, vaccination status, demographics, and other variables. Access RECOVER data in Open PIC-SURE.
  • Controlled access (registration and permission required): Access to de-identified participant-level datasets is available through BioData Catalyst® (BDC). Explore RECOVER data in BDC.

An important part of the NIH Data Management and Sharing Policy is the need to share raw data underlying peer-reviewed publications. RECOVER addresses this requirement by periodically releasing a snapshot of all the data collected up to a certain point.

The most recent release of RECOVER Adult Cohort Study data is a snapshot captured on December 5, 2024. The most recent release of RECOVER Tissue Pathology/Autopsy Cohort Study data is a snapshot captured on September 5, 2024. The most recent release of RECOVER Pediatric Cohort Study data is a snapshot captured on June 15, 2024. Future releases are expected to occur about every six months.

Public Access

Open PIC-SURE has a YouTube channel with videos that cover the basics of finding, using, and interpreting study variables. Training on how to query a RECOVER dataset for specific variables (e.g., symptoms, vaccinations, blood tests) is also available, with more training in development.

The following YouTube videos provide guidance:

Controlled Access

Respect for and protection of the interests of research participants are fundamental to NIH’s stewardship of people’s personal health data, including RECOVER study data. The NIH Data Management and Sharing Policy encourages researchers to plan for the ways that participant data may be used and shared, and to share those plans when they ask for participants’ consent to participate.

RECOVER study participants who gave informed consent to share their data did so with the understanding that their confidentiality and privacy would be protected. This is why the controlled-access process is required and was implemented for RECOVER studies.

Who can apply?

The following types of investigators and scientific staff can apply for controlled access to participant-level RECOVER data:

Extramural investigators
  • Senior, non-NIH researchers who have been awarded NIH grants. These researchers must be permanent employees of their institution at a level similar to a tenure-track professor at a college or university or a senior scientist. Their responsibilities should include activities like laboratory administration and oversight. People who work as laboratory staff or academic trainees such as graduate students and postdoctoral fellows are not eligible to apply for this level of access.
  • Employees of research institutions awarded NIH grants. To be eligible, they must: have administrative responsibility for the data; have substantial research involvement in the award that generated the data; or need access to carry out research unrelated to their portfolio management responsibilities.
Intramural investigators
  • Federal employees, usually working at the NIH campus in Bethesda, MD. They must be tenure-track investigators, senior investigators, senior scientists, senior clinicians, or staff scientists.

How to apply

The process of applying for controlled access is different depending on whether the individual is an extramural or intramural investigator:

Extramural investigators must create an eRA Commons account before requesting access. eRA Commons is the NIH’s grants management system. To obtain an eRA Commons account, individuals must register with eRA Commons. A “Research Use Statement” is required as part of the registration process. The statement must describe the specific aims and/or hypotheses to be evaluated, provide a non-technical summary of the research plan, and include a BDC-specific “Cloud Use Statement.”

Registered eRA Commons users should visit the NIH database of Genotypes and Phenotypes (dbGaP) controlled-access portal to begin the data access request (DAR) process. The dbGaP was developed to store and share data and results from studies about the relationships between genotype (a person’s DNA or genetic code) and phenotype (a person’s physical characteristics, such as their eye color, blood type, and height).

Intramural investigators must submit a completed NIH Intramural Request Form to the Genomic Data Sharing (GDS) mailbox to establish an account in dbGaP. Once you receive an email confirming that the Request Form has been processed, you will be able to log in to dbGaP and apply for authorized access.

Resources

RECOVER Observational Study Publications

RECOVER Observational Study Documents

Data References and Access Information

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